Noah’s Hope

Life with Batten disease is a daily struggle for 8-year-old Noah and 6-year-old Laine. It’s also a heartbreaking battle for the people who love them, especially their parents, Jennifer and Tracy VanHoutan.

Batten disease — or Late Infantile Neuronal Ceroid Lipofuscinosis — is a rare and genetic illness marked by seizures, loss of muscle coordination and progressive mental deterioration. Sadly, there is no cure. Children with the disease usually die between the ages of 8 and 12.

Fewer than 500 children in the U.S. have Batten disease. With such a small patient population, research is challenging. There aren’t as many medical experts or researchers focused on the disease.

And funding is scarce. While cancer research attracts more than $7 billion in the U.S. each year, a rare disease such as Batten raises about 0.001% of that amount*.

The VanHoutans work tirelessly towards a cure for Batten disease. Since Noah’s diagnosis, they have raised more than $250,000 and collaborated to fund six research studies around the world. Recently working with Partnership for Cures, Noah’s Hope received a Tellabs Foundation grant for research.

* I don’t have exact figures, but this is an extremely conservative estimate. The National Cancer Institute, the largest federal funder, awards about $5 billion each year. NGOs also raise billions. Charities focused on breast cancer, for example, raise about $1.7 billion a year, according to Charity Navigator. It doesn’t count corporate research funds or the full amount of federal or private funding. Tracy VanHoutan estimates that Late Infantile Batten disease raises between $750,000 to $1 million each year, including NIH and private funding.